Clinging to Hope, for as long as hope could

Baby Hope was a fighter. Had to be. "God gave her a crappy body."

That assessment from her grandmother was obvious to doctors even before the tiny child was born. While her twin sister developed normally next to her, Hope "wasn't moving her limbs and they were in a very funny position," as Dr. Lee A. Muskovitz of SMDC Health System explained.

The pregnancy was "high-risk." A Caesarean section was scheduled in Duluth, which was more emergency-ready than Hayward, the area where Hope's 18-year-old mother, Desiree Brock, and her 24-year-old father, Daniel Ogren, lived.

The babies were born May 22.

Little Cieara was perfect: 7 pounds, half an ounce, 19 inches long. Her hair was short, her eyes as blue and as sparkling as Lake Superior.

Hope was puny: 4 pounds, 7 ounces. She struggled just to breathe and immediately was connected to a respirator and oxygen. Her larger joints -- her hips, shoulders, elbows and knees -- were immobile, "stuck in one position," Muskovitz said. The condition is known as arthrogryposis. In addition, Hope had a curved spine, clubbed feet and pulmonary hypertension, which meant the arteries in her heart weren't dilating enough. Her liver pushed into her lung.

Her family didn't hesitate to baptize her.

"She really should not have survived," her grandmother, Kathy Brock, told me at the time. "But she's a toughie. She's my granddaughter. She's showing them."

And she did. For three months in the neonatal intensive care unit at St. Mary's Medical Center, Hope survived. A day at a time. Doctors explained to her family that sometime early in her mother's pregnancy there was, for some reason, an injury to the nerve cells that affect muscle movement. "We think there might have been a problem with blood flow to the nerves as they were developing," Muskovitz said. That happens sometimes with twins. "But we aren't sure," he said, exactly what caused Hope's many ailments.

Her mother and father returned home to care for Cieara. Her grandmother, retired after 20 years with the water department in Milwaukee, stayed at Hope's bedside. She napped when she could. Early, sometimes as early as 4 a.m., she wandered outside the hospital to be alone. And to pray. "Lots and lots of praying," Kathy Brock said.

"I had to become strong in my life. Nobody else was going to take care of me," said the mother of three and grandmother of six. "Anything that's happening to someone I love, I fight for them and I fight hard."

She stayed with Hope as the infant fought to eat and breathe on her own. A long-term feeding tube was installed. Another tube, for breathing, snaked from her tiny neck.

But her brain developed normally, doctors determined, and, amazingly, she improved. She was doing so well, the doctors said, she could be moved from Duluth to the children's hospital in Madison and, from there, to her grandmother's house in Coloma, about 80 miles north of the Wisconsin state capital. Kathy Brock had the time to care for Hope and could arrange for specialists, home visits and other professional help. Plus, she "fell in love with the little girl like you wouldn't believe," she said. She looked forward to the day she could bring Hope home.

Moving a baby whose survival depends on a ventilator, monitors, pumps, a feeding tube and other equipment proved no minor undertaking. The best and safest way to go about it, Dr. Muskovitz determined, was an hour-long jet ride from Duluth to Madison with equipment and medical personnel on board.

But such a flight isn't cheap: $8,000 to $9,000. And because the move wasn't necessary for a higher level of medical care, her family's insurance company refused to pay. Such a refusal, Dr. Muskovitz said, "is rare."

Kathy Brock bristled: "Where does an insurance company get the right to disagree with doctors?" she demanded in an e-mail I received. "They're playing with my granddaughter's life."

The insurance company, Security Health Plan of Marshfield, Wis., claimed later that it never received a request for a medical flight, that it had no such documentation.

The claim is contrary to the medical records on file at SMDC and elsewhere -- and puzzling, considering the flurry of activity that followed on Hope's behalf.

Terry Mahoney and other St. Mary's social workers contacted the Shriners, March of Dimes and other charitable organizations. William King of Cirrus Design offered a plane, pilot and free flight. And Kathy Brock wrote letters and made phone calls to every news organization, politician and bureaucrat she could think of in Wisconsin, including the governor and secretary of health.

"Grandma went on an independent campaign," Dr. Muskovitz said.

A campaign that paid off. Waushara County, Wis., and the Wisconsin Department of Health and Family Services worked together to switch Hope's insurance from the HMO arranged under Badger Care, a state-run program for families in need, to a federally mandated Birth to 3 Program operated by Waushara County. The program paid for the Aug. 27 flight.

Two days after arriving in Madison, Hope's breathing worsened. Kathy Brock rushed to the hospital.

"While I was there she coded. She was gone for almost 25 minutes," she said. "An extremely well-trained nurse -- her name was Heather and I'll be forever grateful to her -- brought her back."

Hope was put on several medications, including for pain and to help her heart pump blood. The little girl amazed her doctors in Madison as much as she had in Duluth by improving once again -- and by not giving up.

She amazed her grandmother, too, when, on Dec. 4 -- after Kathy Brock had successfully arranged for around-the-clock, in-home nursing care, and after she had completed many long weeks of training to learn how to read Hope's monitors, change her tracheotomy, clean out her feeding tube and otherwise care for her -- baby Hope came home.

"So far so good," Kathy Brock reported to me in an e-mail. She included pictures. "We are doing just fine," she said.

But an e-mail two weeks later -- three days before Christmas -- took away my breath. Reading it was like a punch to the gut. "Just wanted to let you know that my darling Hope passed away late this afternoon," Kathy Brock wrote.

I called.

"She just got tired," she explained. The baby had been back on oxygen full-time, and three days before she died, she started suffering seizures.

"I had to make a decision," her grandmother said. "My decision was she was tired of fighting, so we let her go."

Inside the only home she'd ever know, baby Hope opened her eyes one last time and looked up at her grandmother. She smacked her lips quietly. A kiss. "It's all right," she seemed to say. Then, a fighter to the end, she closed her eyes for the final time.

Chuck Frederick is the News Tribune's deputy editorial page editor. He can be reached at 723-5316 or at cfrederick@duluthnews.com .